Takhmina Haidarova, Tajik advocate for the rights of women living with HIV.
By Ed Holt
BRATISLAVA, Mar 7 2024 – Born and raised in a rural area in a traditional Tajik family, Takhmina Haidarova managed to finish high school with excellent grades and wanted to go to university.
“[But] it was compulsory for my family to give higher education to boys, and girls were trained to be housewives,” she says. Her dream of higher education was instead replaced by an arranged marriage to a cousin.
“I was strongly against this wedding, but my father decided for me and married me to him. I hadn’t even seen him before the wedding,” she tells IPS.
She became pregnant soon after the wedding, but her husband, who had worked in Russia before he wed her, left to return to his work there two months into the pregnancy. She gave birth to a daughter, who, however, died after falling ill a year later.
Haidarova was referred to doctors, who ran tests and discovered she had HIV.
“When I told my husband about it, it turned out he had known he had HIV for a long time and had hidden it from me,” she says.
Not long after, her husband returned to Tajikistan. He was seriously ill and was admitted to the hospital. When he died soon after, both his and Haidarova’s families found out they both had the disease, and the stigma and discrimination she has faced for many years since then began.
“None of my relatives communicated with me; they all avoided meeting with me,” she tells IPS. “Society in general refuses to recognize people with HIV,” she says.
But Haidarova decided to take a stand against it.
“When I found out I was HIV positive, my life changed dramatically. I lost my family support, my home, my health, and my sense of peace. It was very difficult and painful. But I decided that I would not let this virus define my life or the lives of other women.
“My husband died, and I started to work at an NGO while at the same time pursuing my higher education. Right from the start, I was open about my HIV status and never hid it,” she says.
“I started helping women with HIV because of my own experience of living with the virus. I know how difficult it is to deal with this diagnosis, especially when resources and support are limited,” she adds.
Today, Haidarova is a prominent advocate for the rights of women living with HIV (WLHIV) in Tajikistan, heading the Tajik Network of Women Living with HIV, based in the capital, Dushanbe. The organisation conducts information campaigns, organizes group sessions, and provides psychological and other support services to WLHIV.
“Starting an organization to support women with HIV was a natural step for me. Together with other women, we started to fight for our rights, for access to quality health care, for public education about HIV, and for support for those in the same situation. My goal is to make life easier for women and girls with HIV,” she says.
So far, she says, the work of her organization and others is making some progress. Through years of determined lobbying and cooperation with the government, official policy on HIV/AIDS has moved towards a greater recognition of the need to ensure rights for people living with HIV (PLHIV)—this is specifically set out in the country’s National HIV/AIDS Plan.
One of the most obvious signs of this, HIV advocates say, is a recent ruling by the Supreme Court.
Article 125 of Tajikistan’s Criminal Code currently criminalizes HIV transmission and exposure, carrying a two-year prison sentence, which rises to up to five years for transmission by someone aware of their status, and as much as ten years when committed against multiple people or a minor. Prosecutions can be brought against PLHIV on the basis of just a potential threat of HIV transmission. In some cases, this can be simply the fact that someone is HIV positive.
Women living with HIV make up 70 percent of all convictions under Article 125, according to UNAIDS.
“WLHIV are more often prosecuted [under Article 125]. As a rule, they do not have money for a lawyer [to defend themselves against the charge],” Larisa Alexandrova, an expert on HIV and human rights at the Centre for Human Rights, told IPS.
However, at the end of December last year, the Supreme Court issued a ruling on Article 125 under which the judicial system should in the future take into account other factors apart from simply HIV status, such as whether someone is on antiretroviral treatment and has an undetectable viral load, condom use, and if both parties are fully aware of the other’s HIV status.
Haidarova is optimistic that the ruling will bring positive change and believes it is an important first step towards decriminalizing the disease, which should help WLHIV.
But as some HIV activists in Tajikistan told IPS, what is written on law books is one thing, and what actually happens in practice is another.
“There are laws on paper that guarantee human rights equality for people in marginalized communities, including women. But the public, the police and judiciary, and even wider society break these laws on a regular basis,” one HIV activist who works with marginalized communities in Tajikistan told IPS.
People living with HIV, especially women, routinely report discrimination in the healthcare sector. Haidarova says she is no stranger to such experiences.
“In 2019, doctors told me the baby I was carrying was dead, and I urgently needed to terminate the pregnancy, but the doctors at the polyclinic kept me in the hallway for two hours and eventually said they would not perform the procedure because I had HIV and they wanted to refer me to another facility. I eventually managed to call a doctor who knew me, and she came and performed the procedure herself.
“Then, when I gave birth to a child last year, when it was time for delivery, I came to the maternity hospital, and they took me from the general maternity ward to the isolation ward. None of the doctors would come to me, and I had to call a doctor I knew who was on vacation at the time and explain the situation. She came to deliver the baby herself. We live in the 21st century, when medicine is so advanced, but despite all this, women’s rights are violated at vulnerable moments when they are powerless,” she said.
Takhmina Haidarova is hopeful that changes to the law that criminalize HIV exposure and transmission in Tajikistan will ensure women living with HIV are not unfairly targeted.
Meanwhile, in wider society, issues around stereotypes and prejudices about gender-based violence (GBV), in part related to religious beliefs among the majority Muslim population, deepen stigma and discrimination, she says, warning that these are having a dangerous impact on the spread of the disease.
“People who are at risk and in need of HIV information, counseling, and testing face barriers to accessing appropriate health care and services. Many of them fear discrimination and negative attitudes from doctors and other health care providers, so they prefer to go without the help they need,” she says.
Law enforcement is another area where WLHIV faces disproportionate discrimination. Activists say that many women living with HIV are victims of GBV but fear reporting the assault to the police or will often withdraw an allegation not just out of fear of finding themselves without economic support—the overwhelming majority of women in Tajikistan are economically dependent on their husbands—but also because of concerns that their HIV status may be disclosed.
Activists say that in some cases, when police attend incidents of GBV and find the woman involved is living with HIV, they will look to take action against her under Article 125 rather than investigate the assault.
The discrimination and stigma women and others living with HIV face is deterring them from accessing prevention, testing, and treatment services and impacting efforts to tackle the disease, activists say.
Tajikistan has over 15,000 people living with HIV, but the number of new HIV infections has increased by 20% over the past 10 years, and the percentage of new HIV cases among women has risen from 31% in 2011 to 36% in 2022, according to UNAIDS.
Haidarova says the government is committed to strengthening rights for people living with HIV, but that more needs to be done to educate people about it and protect vulnerable groups from discrimination.
As she is keen to stress, her own experience shows that stigma and discrimination around HIV can be overcome.
“My story is a painful one, but everything is slowly getting better for me now. I started a family of love—my husband is HIV negative, and we have two beautiful, healthy children.
“I proved to my family that people with HIV can live a full life, be happy, start a family, and give birth to healthy children. When they found out I wasn’t dead and that everything was fine with me, they quietly began to communicate with me and invite me to their events. It took some time, but they understood that while HIV is scary, you can live with it,” she says.
IPS UN Bureau Report
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